Survey Findings

Overall Lack of Awareness: 40% of adults in the U.S. do not link agitation symptoms to Alzheimer’s disease.

Caregiver Misconceptions: 73% of caregivers believe agitation in Alzheimer’s dementia requires the same care approach as memory loss alone.

Emotional Burden: 93% of caregivers of people experiencing symptoms of agitation in Alzheimer’s dementia report feeling overwhelmed or emotionally drained. Nearly half (49%) say agitation symptoms are harder to manage than memory loss.

Personal Sacrifices: One in four caregivers of people experiencing symptoms of agitation in Alzheimer’s dementia (25%) have reduced work hours or left jobs to accommodate caregiving duties. Their health is also suffering: 48% of these caregivers have difficulty sleeping and nearly a quarter (22%) note a decline in their own physical health. 

Stigma and Silence: Nearly a third (32%) of caregivers of people experiencing symptoms of agitation in Alzheimer’s dementia have been reluctant to discuss agitation in Alzheimer’s dementia with a healthcare professional because they feel guilty or fear talking about the person they care for in this way. 

Read the full survey report and learn more about agitation in Alzheimer’s dementia.

A Caregiver Story

Lamia Scott, 43, juggles life as a single mom to an energetic 9-year-old son, with work as a busy flight attendant, and caregiving for her mom, Marvie, 75, who lives with agitation in Alzheimer’s dementia. As a former middle school and high school teacher, who also coached track, volleyball, basketball and softball, Lamia is now using all her skills to advocate for caregivers of loved ones living with agitation in Alzheimer’s dementia. Today she lives in Dallas, Texas, with her mom and son. She is a paid collaborator of Otsuka and Lundbeck. 

“My mom, Marvie, is the sweetest, most amazing, warm-hearted, and kind-spirited person I know. Just before her diagnosis of Alzheimer’s disease, we noticed mom’s mood started to change. She could suddenly become irritated, agitated and uncharacteristically short. Ultimately, those outbursts drove me to the doctor for answers, and that’s when we learned mom has Alzheimer’s disease. It wasn’t until a year later that she was also diagnosed with agitation in Alzheimer’s dementia – which many people don’t know is a separate but related condition that causes restlessness, verbal aggression and physical aggression. 

Caring for my mom through her agitation in Alzheimer’s dementia has brought constant and unpredictable changes into our lives. Seeing my happy and sweet mom now suddenly negative, shouting and crying all the time, has been absolutely heartbreaking. Not only has the disease changed my mom as a person – it has also changed our daily routines and put our personal plans on pause. I miss the relationship we always shared, and cling tightly to the glimmers of the mom I know, who still shines through – happy, loving and free – between the outbursts.  
 
Receiving mom’s agitation in Alzheimer’s dementia diagnosis helped me understand it’s not really my mom treating me differently when she’s acting out, it’s the disease. If you know someone caring for a loved one with agitation in Alzheimer’s dementia, they are going through difficult changes right alongside their loved one. Checking in on a caregiver from time to time and offering them a community of support can make a world of difference.”

Survey Methodology

The Alliance for Aging Research’s Agitation Blindspot in Alzheimer’s Care Survey provides an overview of agitation in Alzheimer’s disease and describes results from two, distinct, online national surveys conducted by Wakefield Research.

The first survey was conducted among 1,000 U.S. Alzheimer’s caregivers, between April 21 and May 5, 2025, using an email invitation and an online survey. The term “caregivers” was defined as unpaid or family caregivers who regularly provide care for someone with Alzheimer’s disease. The second survey was conducted among 1,000 nationally representative U.S. adults ages 18+, between April 21 and May 5, 2025, using an email invitation and an online survey.

Results of any sample are subject to sampling variation. The magnitude of the variation is measurable and is affected by the number of interviews and the level of the percentages expressing the results. For the interviews conducted in this study, the chances are 95 in 100 that a survey result does not vary, plus or minus, by more than 3.1 percentage points from the result that would be obtained if interviews had been conducted with all persons in the universe represented by the sample.